Advocate, part deux

Wait a minute… the February blog carnival is about what it means to be an advocate. Didn’t I just write about that in January? Can I just submit that one? No? Darnit! Oh well, I suppose this will give me fodder for new blog material.

So here’s the deal. I still struggle with the whole advocacy concept. I’m still trying to break out of the constrictive definition of advocacy that I’ve formulated. A definition that includes words such as these:

Influential. Assertive. Vocal. Connected. Persistent.

What do these words all have in common? They imply a hierarchy. They suggest that we need to appeal to a higher authority (not THAT one) to influence change. That the targets of our efforts are limited to governments, suppliers, manufacturers, researchers, and insurers; and if they are to remain steadfast and inflexible, then all of our advocacy work will be for naught.
But what I’m learning is that this couldn’t be further from the truth. Advocacy doesn’t just happen vertically. It goes horizontally, too. And diagonally. And ‘round and ‘round and ‘round.

For instance, let me tell you why I finally decided to take the plunge and trade my pens for an insulin pump back in 2006. The story I like to tell is that it’s because my wife and I decided it was time to start a family — and in order to be a good father, I have to make sure I’m able to focus on the kids and not worry about my own well-being. And that’s true, but it took a couple of years later for me to really be “at peace” with that decision.

.

The reason I didn’t start using a pump earlier isn’t because family-life wasn’t yet on the radar, nor was it because doctors hadn’t pushed me to make the switch. It was because I was playing in D-league amateur ice hockey and thought the tubed appurtenance would diminish my game, which was already pretty bad as it was. I had no intention of, as one endo suggested, ask the ref to abruptly halt the game so that I could “check my pump” after a fall or a hit. Another endo shrugged his shoulders when I asked for advice with meters, explaining that my meter was useless to bring with me to the bench because it was too cold. I really didn’t believe that I could play, without additional restrictions, until one TuDiabetes member shared a YouTube video where a professional hockey player demonstrated how he wore a pump during games.

That post; that link to a YouTube video changed my life forever, and made me stop looking at my pump as a restraint – and rather as a gateway to new freedoms. Whether he knows it or not, or intended to be or not, the member who posted it is an advocate. And thanks to him, I’ve tried to pass that message (and that link) on as often as I can. To pay it forward.

The thing is, we may not feel comfortable when it comes to talking “up” to decisionmakers or making loud proclamations of “the way it should be” to the masses. We don’t need to look at advocacy in terms of three tiers: (1) those with the power to do things, (2) those with the voice and persistence to demand things, and (3) those who stand to benefit from the things. We don’t need to cross those lines to make a change.

For a perfect example, take a look at the recent Spare-a-Rose campaign. This wasn’t organized in collaboration with any businesses, organizations, or even nonprofits. It was all done at the “regular folks” level. A few people had a great idea, a bit of motivation, and then it went viral. Over $20,000 was raised, and though the money went to the International Diabetes Foundation, the IDF was not involved in the campaign. We did it on our our own. and we proved that we can make a difference.

I believe that the biggest source of guidance and encouragement for people with diabetes comes from one another. Not from doctors, or the FDA. Nobody likes being talked down to or told what to do, and even I resent the magazine articles and recipes that insert words like “whole-grain” and “low-fat” into every discussion of food.

Advocates can talk, listen, and engage one another. Advocates can earn trust and credibility because shared (or similar) experiences. Advocates can tell stories and influence change – sometimes without asking – and often just by being.

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